Now We Wait…

While little Levi wasn’t quite able to get back to his baseline of normal after his rough transfer, ENT decided that the sooner we open his airway the better.

On Monday morning Levi went to the operating room for a bronchoscopy and the anterior posterior cricoid split (APCS). We were worked into the operating room schedule so Jake, Malachi, and I just waited by his bedside until an opening became available.

The surgeon came up to discuss the procedure with us and explained that it may not be possible to safely do the surgery due to his size. They have never done this procedure on a child as small or as young as Levi and she said if it wasn’t going to be safe to do we would have to trach and pursue other routes later. Jake and I were so worried that it may not happen and waited anxiously, hoping that every extra minute that we waited while he was in the operating room was a good sign that they were proceeding with the split.

We found ourselves yet again having to do the pre-surgery hand off…one of the worst feelings ever. This is now the 14th time I have had to place one of my sweet little boys in the hands of strangers and see them wheeled off to the operating room. That moment always breaks my momma heart and I always feel so empty as I sit in the waiting area. It never gets easier.

Pulmonology led the bronchoscope and came out to talk to us when their portion was complete. He explained that the airways below the trachea are a little floppy, a term called bronchomalacia. They collapse a bit when he breathes but we don’t know how opening the upper airway by the APCS procedure will affect this…our hope is that it improves it.

The ENT surgeon did the rest of the procedure. I will try to do my best to explain it in really basic terms…

The main issue is that Levi’s vocal cords are paralyzed (not moving) and stay closed when he tries to breathe in. Doctors have to find a way to open them enough to allow air to pass through.

There is a ring of cartilage in the middle of our necks called the cricoid. This cartilage is kind of a anchor for ligaments, muscles, and other cartilages that are involved in opening and closing the airway.  The cricoid looks like a giant ring:

cricoid-cartilage-definition-location-function-problems-cricoid-cartilage-definition

So in an anterior posterior cricoid split procedure, the surgeon endoscopically cuts the front (anterior) and back (posterior) of this ring.  They then place a balloon into the cricoid and inflate it to break any leftover strands that may still be connected.

The balloon dilator is taken out and a larger than necessary breathing tube is placed in the throat to help hold that widened cricoid open. The goal is for the throat to heal around the tube and create some strong scar tissue to keep it wide.

Levi will be on the ventilator for 10 days then we will go back into the operating room to take a look and see if the scar tissue is formed enough to take the breathing tube out. When the tube comes out, the hope is that the gap between the vocal cords will be wide enough to allow air to pass through.

If he passes the test and gets the all clear for the tube to come out, we will then slowly start to wean his oxygen support and see how he does. We won’t know whether it is successful until we get him on low levels of oxygen and see if he can breathe on his own. So it will be several weeks before we feel confident that it did/didn’t work.

If it does work, we will then have to teach Levi how to drink and make sure that it is safe for him to do so. As you can imagine, when we widen that gap between the vocal cords there may be an increased risk that fluid could get through and into places they don’t belong (called aspiration). If that happens we may have to consider a feeding tube but our prayer is that he will be able to swallow perfectly fine.

So enough of the medical terms! Let’s move on to how he is doing…

Levi is miserable. But I think I would be too, so I am not shocked. He is on the ventilator, but it is down his nostril instead of in his mouth. With the large tube in his throat his vocal cords cannot come together at all and make sounds. So when he cries absolutely no sound comes out and you would have no idea that he was in distress unless you were looking at him. He is arching his neck back in discomfort and the nurse cannot re-position him without calling a respiratory therapist over to help guide the ventilator tubing.

He is getting morphine frequently in addition to a handful of other pain meds. He is still very swollen from the extra fluids in the operating room and just looks absolutely pitiful (as you can see from the pictures below). Today was the first day that he started to have a few glimpses of the “old Levi” and he even woke up for a few minutes and actively looked at mommy and daddy. We listened to some Christian music, which he loved. He has taken a liking to “Revelation Song” by Kari Jobe and always perks up when that one comes on.

The picture on the right was taken Saturday evening and the picture on the left was taken Wednesday. 

As hard as it is to see him in so much pain and discomfort I have to keep believing that we made the right decision in pursing this for him. Faith over fear. We are continuing to believe that this surgery will work. We are continuing to declare “Ephphatha” over his airways.

Malachi is still being such a good trooper these days. He gets a little silly when he is in the NICU as he listens to all of the fun and strange noises around him so we have to take him out frequently to let him get out all the giggles. They told us today that the NICU will close to children visitors on December 27th, which will definitely complicate things a bit. We are hoping to have a room in the Ronald McDonald House by then so we will have a place for one of us to stay with him aside from a tiny hotel room.

IMG_9686

I just can’t get past how quickly he is changing these days. He will be 5 years old in February!

On that note, we do have a big need that is unfulfilled right now. Starting January 3rd Jake will be spending weekdays in Tennessee. We need to reserve the few sick days he has left for emergencies now that both of the boys are medically tricky. If you know of anyone in the Cincinnati area that is physically and logistically capable of lifting and caring for a 40 pound special needs child for a few hours each day at the Ronald House, we are going to need some help. We would prefer to be able to train a few people who can come consistently on weekdays as Malachi does have severe epilepsy and we get nervous leaving him for long periods of time with people who don’t know what to do. We are obviously ready and willing to pay as this will be a big commitment. If you know of anyone who seems like a good fit please email me at jacobandleah@gmail.com.

Tomorrow was my projected due date for Levi. We always knew that I couldn’t safely carry him to his due date, but never did we imagine that we would have blazed this path before that due date hit.

Jake and I find ourselves shaking our heads periodically throughout the day, trying to make sense of the route our life has taken. Sometimes we can’t help but laugh out loud, afraid if we don’t let out some explosion of emotion we will burst with the pain that our life can sometimes create. I think back to that dream we had….four rambunctious and wild boys and me as a stay at home mom, carting kids to and from school, and sports. Never did our visions involve wheelchairs, hospitals, surgeries, therapies, and suffering.

Today we had one of those laugh out loud moments as we came back into the NICU unit from lunch. As we walked towards his pod the intercom system came on and the woman stated “Emergency at C3, I repeat emergency at C3” and people from everywhere started running towards Pod C. I looked at Jake wide eyed, as C3 is Levi’s bed. I felt like I was going to pass out as I ran towards his bed only to find that someone had accidentally hit his emergency button. He was absolutely fine but the emotions that moment brought just about did me in. I sincerely felt like I was going to pass out and had to sit down for several minutes.

I know it sounds so cliche to compare our story to Job’s in the Bible, but I can’t help but read that story with a whole new set of glasses.

When you read the story of Job it is easy to focus on his sufferings and sadness. But when I read the story I find myself clinging to the details, desperate to find comfort in them.

One of the biggest things that has always stuck out to me is the way God spoke about Job.

Job 1:8 Then the Lord said to Satan, “Have you considered my servant Job? There is no one on earth like him; he is blameless and upright, a man who fears God and shuns evil.”

Wow what amazing compliments God had for Job! “No one on earth like him”, “blameless and upright”, “a man who fears God and shuns evil”. Those words alone are such compliments coming from anyone, but to hear them come from the mouth of God is so exceptional and special.

But beyond the words themselves, it is also sticks out to me that God not only noticed Job but bragged about him to the devil. And boy, did it irritate Satan. So much so that Satan decided to set Job in his sights for not only one, but two vicious attacks.

After the first attack Job responded in a way the devil never saw coming:

20 At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship 21 and said:

“Naked I came from my mother’s womb,
    and naked I will depart.[c]
The Lord gave and the Lord has taken away;
    may the name of the Lord be praised.”

22 In all this, Job did not sin by charging God with wrongdoing.

What an example for us to follow! He allowed himself to mourn, but he also worshiped God and praised His name through the storm.

I am not going to lie- praising God has not been my first instinct through all of this. But the more I look for God’s hand in our lives the more I find it, and boy is it blowing me away!

When you go through the dark stuff in life it is so incredibly easy to focus on the sadness and frustrations those dark moments bring. It is even more tempting to dwell on that darkness and allow it to become a part of you. But as I read stories like Job I am able to see flickers of light, and it is those flickers that we have to focus on.

I don’t have any idea what kinds of things God is saying about the Carroll family right now. But I have such a strong desire to live a life worthy of a call out from God. And in order to do so, I just have to remind myself to continually focus on the flickers of light.

God orchestrated and brought us to Cincinnati where Levi would have a chance for a normal life with effortless, device free breathing. And He has given Jake and I a supernatural peace about this decision.

God is continuing to provide for us emotionally, physically, and financially. He has blessed us more than we deserve.

God has already used Levi’s story to bring others (including Jake and I) closer to Him.

The God moments have been pouring in over these last few weeks, each serving as a gentle reminder that God is still very much in control of our situation.

Faith over Fear.

This week we had to lay our finances at the feet of God and release our grasp on it. Bringing Levi to Cincinnati was a big step of faith as it is “out of network”. While we have backup savings for Malachi emergencies we never expected to deplete it with Levi’s arrival. In addition to November and December costs for Levi’s ICU stay we are looking at starting all of the deductibles and out of pocket max amounts over in 11 days.

Thinking about these massive numbers was keeping me up at night, and I had to make the decision to lay our need at the feet of God. Over the last week we have been so generously supported by our family, friends, community, and complete strangers. We have received gift bags of snacks, donations, encouraging cards and messages, and have had so many offers of support. The Lord has used many of you to build a camp around us, and we are so speechless with gratitude.

Tonight is one of those nights that I am going a little cross eyed and not making much sense, so that is my cue to wrap it up! The rest of this week we are focusing on Levi healing and trying to keep him as calm as possible. Please pray with us that his airway is opened next week and that he is able to move on to focusing on regular baby tasks, like drinking a bottle. Pray that God continues to strengthen our family, both physically and emotionally. And pray that God sends so many flickers of light in our direction that we can’t help but fall to our knees and worship Him.

Thank you for believing in miracles for both of our special and unique boys. They are precious in His sight.

God bless,

Leah

3 thoughts on “Now We Wait…

  1. Malachi looks like such a big boy in that picture. How far he has come since I held him at soccer games in those plaster like casts. Praying for you all daily. Thank you for your posts. We should all try a little harder to look for Gods hand in our life circumstances, I needed reminding of that ❤️

    Like

  2. Hi Leah,
    Your cousin Michael works with my mom at LJB. My mom had forwarded me this excerpt of your page (my thoughts and prayers are with your family). I’m an OT at CCHMC, and have spoke to some co-workers about how to best help you with Malachi during this time. It was suggested to me that you contact United Cerebral Palsy of Cincinnati at (513) 872-5265. They often can connect individuals quickly to services in the area. However, if this doesn’t work, I would love for you to text or email me directly so that we can get you some additional help.
    Email- Emily.riepenhoff@cchmc.org
    Phone- 4192363298

    Merry Christmas and God bless!
    Emily

    Like

  3. Dear Leah, you are an amazing writer. Your blog is full of wisdom, honesty and your heart, and love for God in the midst of everything. I am praying for this period of waiting and for Levi’s healing and I am lifting all of you in prayer, asking God for strength in the journey.

    Like

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